Hi All - I am a 29 year old wife and mother and have been dealing with Crohn's Disease for about 10 years now. I started having symptoms my freshman year of college but wasn't formally diagnosed until my junior year (colonoscopy showed ulcers and I had a perianal fistula).
My Crohn's was "managed" for about 3 years on 6MP, but I never really maintained a full remission. When I was about 24 I started Humira and had a good 3 years of full remission on it. I gave birth to my son 2 years ago, which induced a flare that I have yet to come out of. I switched from Humira to Remicade about a year ago which gave me some relief, but nothing close to the remission I had on Remicade. Since the birth of my son I have developed 3 strictures that are causing a lot of pain when eating and have caused Small Intestinal Bacterial Overgrowth. I also have a lot of inflammation in my TI area that is no longer responding to Remicade.
I have been in a massive flare since June requiring 3 hospitalizations. The first hospitalization revealed massive inflammation in the TI area with a abscess. Every visit is the same - get admitted for about a week on antibiotics, prednisone, and pain killers until I start to feel better and can eat again. Get sent home with pred and some pain killers - get by for a while until the abscess returns and lands me back in the ER, and repeat.
I have met with a few surgeons, one at local hospital and one at the Cleveland Clinic. Both agree that I need surgery (resection and strictureplasty), but feel that I am not physically ready for surgery yet because of all the inflammation and my nutrition levels are low. After my last hospitalization (about 3 weeks ago) I decided to agree to the surgery with my local surgeon. I was sent home on 40mg prednisone and TPN (12 hours per day) and pain relief (oxyContin and oxycodone) and have been meeting with my surgeon weekly to assess when I will be ready for the surgery. I have been tapering rather quickly off the pred because we don't want me on it for surgery (am currently on 25mg).
I am back up to a healthy weight due to the TPN and prednisone and feel much better now that I am receiving continuous pain relief. I am off work and just waiting to get this surgery OVER with. Really, I have been putting it off forever, but all my doctors say there is nothing else they can offer me. They all say I have severe Crohn's and it is impressive that I have gone this long without a surgery. Following surgery, I plan on implementing the SCD diet in hopes to maintain a remission.
What are your thoughts on this surgery? Do I need it? It is hard because I am feeling better right now, but I know it is probably artificial from the steroids and pain medication. I am also off from work so I can rest whenever I want. Eating is still very painful, but I am trying to supplement the TPN with real food and my weight is back to normal (if not a few pounds heavier, ugh). Have any of you had surgery for Crohn's that has led to remission? Anyone regret having surgery?
Thank you for taking the time to read this and offer advice! I am so ready to get this surgery over with and move on with my life. I have been sitting home WAITING around for 3 weeks now and don't know how much more I can take (I usually work full time. My son still goes to daycare everyday and my husband works. BUT my house is cleaner than ever and the laundry is all caught up, haha).
My Crohn's was "managed" for about 3 years on 6MP, but I never really maintained a full remission. When I was about 24 I started Humira and had a good 3 years of full remission on it. I gave birth to my son 2 years ago, which induced a flare that I have yet to come out of. I switched from Humira to Remicade about a year ago which gave me some relief, but nothing close to the remission I had on Remicade. Since the birth of my son I have developed 3 strictures that are causing a lot of pain when eating and have caused Small Intestinal Bacterial Overgrowth. I also have a lot of inflammation in my TI area that is no longer responding to Remicade.
I have been in a massive flare since June requiring 3 hospitalizations. The first hospitalization revealed massive inflammation in the TI area with a abscess. Every visit is the same - get admitted for about a week on antibiotics, prednisone, and pain killers until I start to feel better and can eat again. Get sent home with pred and some pain killers - get by for a while until the abscess returns and lands me back in the ER, and repeat.
I have met with a few surgeons, one at local hospital and one at the Cleveland Clinic. Both agree that I need surgery (resection and strictureplasty), but feel that I am not physically ready for surgery yet because of all the inflammation and my nutrition levels are low. After my last hospitalization (about 3 weeks ago) I decided to agree to the surgery with my local surgeon. I was sent home on 40mg prednisone and TPN (12 hours per day) and pain relief (oxyContin and oxycodone) and have been meeting with my surgeon weekly to assess when I will be ready for the surgery. I have been tapering rather quickly off the pred because we don't want me on it for surgery (am currently on 25mg).
I am back up to a healthy weight due to the TPN and prednisone and feel much better now that I am receiving continuous pain relief. I am off work and just waiting to get this surgery OVER with. Really, I have been putting it off forever, but all my doctors say there is nothing else they can offer me. They all say I have severe Crohn's and it is impressive that I have gone this long without a surgery. Following surgery, I plan on implementing the SCD diet in hopes to maintain a remission.
What are your thoughts on this surgery? Do I need it? It is hard because I am feeling better right now, but I know it is probably artificial from the steroids and pain medication. I am also off from work so I can rest whenever I want. Eating is still very painful, but I am trying to supplement the TPN with real food and my weight is back to normal (if not a few pounds heavier, ugh). Have any of you had surgery for Crohn's that has led to remission? Anyone regret having surgery?
Thank you for taking the time to read this and offer advice! I am so ready to get this surgery over with and move on with my life. I have been sitting home WAITING around for 3 weeks now and don't know how much more I can take (I usually work full time. My son still goes to daycare everyday and my husband works. BUT my house is cleaner than ever and the laundry is all caught up, haha).
